Journal of Community Genetics

, Volume 10, Issue 1, pp 51–60 | Cite as

Evaluating and improving the implementation of a community-based hereditary cancer screening program

  • Samantha GreenbergEmail author
  • Beverly M. Yashar
  • Mark Pearlman
  • Deb Duquette
  • Kara Milliron
  • Monica Marvin
Original Article


Healthcare disparities exist in the provision of cancer genetic services including genetic counseling and testing related to BRCA1/2 mutations. To address this in a community health setting a screening tool was created to identify high-risk women. This study evaluates the implementation of the tool and identifies opportunities for improved cancer genetic screening, including regular clinician education. A mixed-method approach was used to evaluate clinician utilization of the screening tool at Planned Parenthood affiliates. Novel surveys that evaluated acceptance and implementation were administered to clinicians (n = 14) and semi-structured interviews (n = 6) were used to explore clinicians’ perspectives and identify gaps in its utilization. Educational modules that addressed gaps were developed, implemented, and evaluated using a post-education survey (n = 8). Clinicians reported confidence in administering and interpreting the screening tool, but reported less confidence in their knowledge of cancer genetics and ability to connect clients with genetic counseling and testing (p = .003). Educational modules resulted in significant gains in clinician knowledge on genetic topics (p < .05) and increased self-reported confidence in connecting clients with genetic services. The modules reinforced the belief that genetic testing is beneficial for patients at increased risk (p = .001) and is important to inform subsequent medical management (p = .027). While building community clinicians’ capacity to connect clients with genetic services is crucial, it is challenged by knowledge and confidence gaps in discussions of genetic services with clients. Consistent genetic-focused education with non-genetic clinicians can improve confidence and knowledge, enabling a more effective screening program in community health settings.


BRCA1/2 mutations Cancer genetic services Cancer risk evaluation Access to genetic services Genetic education Medically underserved populations 



The authors on this paper would like to thank the Planned Parenthood Federation of America staff (Deborah Nucatola, Courtney Benedict, Zoe Unger, and Karen Shea) and Mary Kint Petit at Planned Parenthood of Mid and South Michigan for their support of this research. Additionally, many thanks are extended to the organizations and individuals that created the resources used for the educational webinars including the American Cancer Society, Dr. Cecilia Bellcross, MySupport360 Hereditary Cancer, Kara Milliron, Chris Chapman, and Marc Stephens. A large thank you is also extended to Ilana Miller for her transcription work.

Funding information

Partial funding for this project was provided by the National Society of Genetic Counselors Education Special Interest Group and the University of Michigan Genetic Counseling Research Grant.

Compliance with ethical standards

All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study, per exempt approval of University of Michigan IRB HUM00090186.

Conflict of interest

The authors declare that they have no conflict of interest.


  1. Armstrong K, Micco E, Carney A, Stopfer J, Putt M (2005) Racial differences in the use of BRCA1/2 testing among women with a family history of breast or ovarian cancer. JAMA 293:1729–1736. CrossRefGoogle Scholar
  2. Bellcross CA, Lemke AA, Pape LS, Tess AL, Meisner LT (2009) Evaluation of a breast/ovarian cancer genetics referral screening tool in a mammography population. Genet Med 11:783–789CrossRefGoogle Scholar
  3. Bellcross CA, Kolor K, Goddard KAB et al (2011) Awareness and utilization of BRCA1/2 testing among U.S. primary care physicians. Am J Prev Med 40:61–66. CrossRefGoogle Scholar
  4. Bellcross CA, Peipins LA, FA MC et al (2014) Characteristics associated with genetic counseling referral and BRCA1/2 testing among women in a large integrated health system. Genet Med:1–8.
  5. Brandt R, Ali Z, Sabel A, McHugh T, Gilman P (2008) Cancer genetics evaluation: barriers to and improvements for referral. Genet Test 12:9–12CrossRefGoogle Scholar
  6. Brannon Traxler L, Martin ML, Kerber AS, Bellcross CA, Crane BE, Green V, Matthews R, Paris NM, Gabram SGA (2014) Implementing a screening tool for identifying patients at risk for hereditary breast and ovarian cancer: a statewide initiative. Ann Surg Oncol 21:3342–3347. CrossRefGoogle Scholar
  7. Brown R, Bratton SL, Cabana MD, Kaciroti N, Clark NM (2004) Physician asthma education program improves outcomes for children of low-income families. Chest 126:369–374CrossRefGoogle Scholar
  8. Carroll JC, Rideout AL, Wilson BJ, et al (2009) Genetic education for primary care providers: improving attitudes, knowledge, and confidence. Canadian Family Physician 55(12):e92–e99Google Scholar
  9. Christianson CA, Powell KP, Hahn SE, Bartz D, Roxbury T, Blanton SH, Vance JM, Pericak-Vance M, Telfair J, Henrich VC, Genomedical Connection (2010) Findings from a community education needs assessment to facilitate the integration of genomic medicine into primary care. Genet Med 12:587–593. CrossRefGoogle Scholar
  10. Christianson CA, Powell KP, Hahn SE et al (2012) The use of a family history risk assessment tool within a community health care system: views of primary care providers. J Genet Couns 21:652–661CrossRefGoogle Scholar
  11. Cohen SA, McIlvried D, Schnieders J (2009) A collaborative approach to genetic testing: a community hospital’s experience. J Genet Couns 18:530–533CrossRefGoogle Scholar
  12. Cohen SA, Gustafson SL, Marvin ML et al (2012) Report from the National Society of Genetic Counselors service delivery model task force: a proposal to define models, components, and modes of referral. J Genet Couns 21:645–651. CrossRefGoogle Scholar
  13. Cohen SA, Marvin ML, Riley BD et al (2013) Identification of genetic counseling service delivery models in practice: a report from the NSGC Service Delivery Model Task Force. J Genet Couns 22:411–421. CrossRefGoogle Scholar
  14. Evans DGR, Eccles DM, Rahman N, Young K, Bulman M, Amir E, Shenton A, Howell A, Lalloo F (2004) A new scoring system for the chances of identifying a BRCA1/2 mutation outperforms existing models including BRCAPRO. J Med Genet 41:474–480CrossRefGoogle Scholar
  15. Gilpin CA, Carson N, Hunter AG (2000) A preliminary validation of a family history assessment form to select women at risk for breast or ovarian cancer for referral to a genetics center. Clin Genet 58:299–308CrossRefGoogle Scholar
  16. Guest G, Namey EE, Mitchell ML (2012) Collecting qualitative data: a field manual for applied research. SageGoogle Scholar
  17. Guttmacher AE, Porteous ME, McInerney JD (2007) Educating health-care professionals about genetics and genomics. Nat Rev Genet 8:151–157. CrossRefGoogle Scholar
  18. Healthy People 2020 [Internet] (2014) Washington, DC: U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion. Available from:
  19. Houwink EJF, Van Luijk SJ, Henneman L et al (2011) Genetic educational needs and the role of genetics in primary care: a focus group study with multiple perspectives. BMC Fam Pract 12:5. CrossRefGoogle Scholar
  20. Kint M (2014) BRSQ training, PPMSM Procedures, and preliminary dataGoogle Scholar
  21. Klitzman R, Chung W, Marder K et al (2013) Attitudes and practices among internists concerning genetic testing. J Genet Couns 22:90–100CrossRefGoogle Scholar
  22. Komenaka IK, Nodora JN, Madlensky L, Winton LM, Heberer MA, Schwab RB, Weitzel JN, Martinez ME (2015) Participation of low-income women in genetic cancer risk assessment and BRCA 1/2 testing: the experience of a safety-net institution. J Community Genet 7:177–183. CrossRefGoogle Scholar
  23. Levine SA, Brett B, Robinson BE, Stratos GA, Lascher SM, Granville L, Goodwin C, Dunn K, Barry PP (2007) Practicing physician education in geriatrics: lessons learned from a train-the-trainer model. J Am Geriatr Soc 55:1281–1286. CrossRefGoogle Scholar
  24. Levy DE, Byfield SD, Comstock CB, Garber JE, Syngal S, Crown WH, Shields AE (2011) Underutilization of BRCA1/2 testing to guide breast cancer treatment: black and Hispanic women particularly at risk. Genet Med 13:349–355CrossRefGoogle Scholar
  25. MacQueen KM, McLellan-Lemal E, Bartholow K, Milstein B (2008) Team-based codebook development: structure, process, and agreement. In: handbook for team-based. Qual Res:119–135Google Scholar
  26. Merriam SB (2001) Andragogy and self-directed learning: pillars of adult learning theory. New Dir Adult Contin Educ 2001:3. CrossRefGoogle Scholar
  27. Metcalfe S, Hurworth R, Newstead J, Robins R (2002) Needs assessment study of genetics education for general practitioners in Australia. Genet Med 4:71–77. CrossRefGoogle Scholar
  28. Moyer V, on behalf of the UP services TF (2014) Risk assessment, genetic counseling, and genetic testing for BRCA-related cancer in women: U. S. preventive services task force recommendation statement. Ann Intern Med 160:271–282Google Scholar
  29. Namey E, Guest G, Thairu L, Johnson L (2008) Data reduction techniques for large qualitative data sets. Handbook for team-based qualitative research 2:137–161Google Scholar
  30. National Comprehensive Cancer Network (2014) Genetic/Familial High-Risk Assessment: Breast and Ovarian (Version 1.2014)Google Scholar
  31. Niedermann K, Fransen J, Knols R, Uebelhart D (2004) Gap between short- and long-term effects of patient education in rheumatoid arthritis patients: a systematic review. Arthritis Rheum 51:388–398. CrossRefGoogle Scholar
  32. Pearlman M (2014) Planned Parenthood: developing and training for the breast cancer risk screening questionnaire (BRSQ). Presented at the Michigan Cancer Genetic Association meeting, LansingGoogle Scholar
  33. Prochniak CF, Martin LJ, Miller EM, Knapke SC (2012) Barriers to and motivations for physician referral of patients to cancer genetics clinics. J Genet Couns 21:305–325. CrossRefGoogle Scholar
  34. Salm M, Abbate K, Appelbaum P, Ottman R, Chung W, Marder K, Leu CS, Alcalay R, Goldman J, Curtis AM, Leech C, Taber KJ, Klitzman R (2014) Use of genetic tests among neurologists and psychiatrists: knowledge, attitudes, behaviors, and needs for training. J Genet Couns 23:156–163. CrossRefGoogle Scholar
  35. Schranz AJ, Brady KA, Momplaisir F et al (2015) Comparison of HIV outcomes for patients linked at hospital versus community-based clinics. AIDS Patient Care STDs 29:150209112614009. CrossRefGoogle Scholar
  36. Segre LS, Brock RL, O’Hara MW et al (2011) Disseminating perinatal depression screening as a public health initiative: a train-the-trainer approach. Matern Child Health J 15:814–821. CrossRefGoogle Scholar
  37. Shields AE, Burke W, Levy DE (2008) Differential use of available genetic tests among primary care physicians in the United States: results of a national survey. Genet Med 10:404–414. CrossRefGoogle Scholar
  38. Small SL, Patel DA (2012) Impact of HPV vaccine availability on uptake. J Nurs Pract 8:61–66. CrossRefGoogle Scholar
  39. Suther S, Goodson P (2003) Barriers to the provision of genetic services by primary care physicians: a systematic review of the literature. Genet Med 5:70–76. CrossRefGoogle Scholar
  40. Trivers K, Baldwin L-M, Al E (2011) Reported referral for genetic counseling or BRCA 1/2 testing among United States physicians. Cancer 117:5334–5343. CrossRefGoogle Scholar
  41. Ward E, Jemal A, Cokkinides V et al (2010) Cancer disparities by race/ethnicity and socioeconomic status. CA Cancer J Clin 54:78–93CrossRefGoogle Scholar

Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2018

Authors and Affiliations

  1. 1.Department of Human GeneticsUniversity of MichiganAnn ArborUSA
  2. 2.Huntsman Cancer InstituteSalt Lake CityUSA
  3. 3.University of Michigan Obstetrics and GynecologyAnn ArborUSA
  4. 4.Feinberg School of MedicineChicagoUSA
  5. 5.University of Michigan Comprehensive Cancer CenterAnn ArborUSA

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